By Jennifer Kaczmarek
There is only one question we should be asking ourselves in the debate over medical marijuana. That question should be, To what lengths would you go to save your loved one? I hope your answer is that you would do whatever it takes to not see the person you love suffer.
It’s time to let go of the fear and panic and remember that marijuana is a natural plant, not a harmful, synthetic chemical that can cause horrifying side effects or even death, though that sort of pharmaceutical is the only legally available option to us now.
Try to put yourself in someone else’s shoes. Imagine your loved one–your daughter, your son, your mother, your father–unable to speak, walk, eat or use the bathroom unassisted, or have uncontrollable seizures. It can leave you feeling helpless. It can leave you wondering if you’re witnessing your loved one’s last breath. Or how about when you’re told that a particular medication will work, only to find out that it has layered the problems in the most horrific ways, creating more harm than good. Now your loved one is dealing with hallucinations, speaking suicidal thoughts, developing lupus, diabetes, and who knows what other afflictions.
This is the reality for thousands. I have seen it in just the 10 souls I have met in my work as a documentary photographer. It’s a cruel, unnecessary reality that can end Tuesday. So, what are we afraid of? And what do we have to lose? Remember, these may be shoes that you are left to fill one day.
WEED: The Story of Charlotte’s Tangled Web, is an on-going documentary series that has grown to include ten families sharing their stories since I started in August 2014. This all began with a desire to learn more about this needlessly controversial issue. It didn’t take long for me to discover how tangled the issues are, while the lives of those suffering most are left in the balance, at the mercy of an inhuman tug-of-war between politics and money, while misinformation stalks the issue like a debilitating illness of its own.
A huge disconnect good intentions and unintended consequences has existed since the Florida Legislature passed the Compassionate Medical Cannabis Act of 2014 (Senate Bill 1030), ostensibly legalizing medical marijuana for some. But the law is limiting. Not only are the eligible illnesses few, but it allows only 0.8 percent or less of tetrahydrocannabinol, or THC, the psychoactive element in marijuana, because the Legislature is fixated on going down any “euphoric” road when it comes to marijuana out of an irrational fear that that would open the way for addiction, or to other drugs. No evidence supports the fear.
This unrealistic fixation on low THC and the law’s stingy application to so few illnesses underscores the importance of proposed Constitutional Amendment 2, on the Nov. 8 ballot. This Amendment would allow for people suffering from a variety of different types of debilitating ailments to choose medical marijuana as one of their medicine.
Hoping Amendment 2 passes or becoming a medical marijuana refugee like many others who have had to uproot their lives.
But it’s pointless to speak of it in the abstract. I have been immersed in the lives of families desperate for this alternative because of what they’ve had to endure, knowing it doesn’t have to be that way. These families want you to know that the need for higher THC is crucial in order for the plant to work for them. What may work for one person may not work for another, which is the problem with the Compassionate Care Act of 2014: it attempts to apply a single fix for all. It doesn’t work that way.
But don’t take it from me. Listen in their own words, through their own experiences, to men, women and children suffering now, needlessly, because of these limitations.
Branden Petro, 14, of Tampa, was diagnosed with F.I.R.E.S., a rare form of epilepsy, when he was 8. He was the 15th person in Florida to get registered for the the high CBD, low THC strain of medical marijuana. CBD is cannabidiol, which provides some benefits without a euphoric effect. “It’s not working,” his mother Renee says, “and that’s why we need Amendment 2 to pass because CBD isn’t enough.” Renee Petro knows that THC helps Branden. In 2014 Branden and Renee were sponsored on a trip to California where Branden was evaluated and monitored under experienced physicians. Branden had positive results with higher levels of THC. Sadly, he has been unable to replicate those results since returning to his home state, where it would be illegal to do so.
Not that desperate conditions don’t lead to desperate measures for some.
Christina Clark, 12, of Saint Augustine, is diagnosed with generalized, intractable seizure disorder. She has failed 17 meds and three brain surgeries. Her mother, Anneliese, has been open about the risks she’s taken to provide Christina with cannabis because the results have been phenomenal. Christina most recently went 12 weeks seizure-free, as opposed to “normally” having one to a dozen seizures a day. It was her second-longest run before going 105 days seizure-free. “Cannabis has allowed the light to come back on in my daughter,” Anneliese says. “Amendment 2 will bring structure, consistency, quality, and control. What I am looking for is the consistency and quality for Christina.”
Case in point: her cycle of good fortune broke today (Nov. 4). Christina had 60 partial seizures by noon.
These families feel the need to come forward and advocate because they have exhausted all measures that conventional medicine could offer them, to no avail.
While some families have been open about their success, it’s been at a price. Caleb Thrift, 9, of Jacksonville, was diagnosed with intractable epilepsy at age 5. His mother Tara was open with Caleb’s physicians about her dispensing marijuana after they were amazed at how well Caleb was doing. But the moment she confided to physicians that she was giving him cannabis oil, they reported her to DCF, the Florida Department of Children and Families.
“I have been investigated twice within one year,” Tara says. Yet because of cannabis, she says, Caleb “is able to read again, he can memorize his alphabet, numbers, and words again. He knows people again. He still has the occasional seizure here and there but he is the child he was before. Everyone knows I give Caleb cannabis. Caleb is not on CBD only. I will not stop fighting for him.”
In Palm Coast, Kimberlee Ramirez says all her daughter’s doctors have given up on her child. Angell Novak is 14. She suffers from severe autism. Kimberlee said last year she felt “there was no hope, no light in the darkness, and then I learned about cannabis and what it can do for kids like mine.” She is hoping Amendment 2 passes or she will have to become a medical marijuana refugee like many others who have had to uproot their lives.
Roby Baird, 44, of Saint Augustine, wishes he had access to quality marijuana for brain recovery after having a tumor removed to control seizures and migraines. Roby is a deeply religious man and believes we should have a right to this plant. “I believe this was a plant created by God to heal people,” he says.
As a person of great faith myself, I believe what Roby says. I have witnessed the miracles first hand. Having watched 4-year-old Bruno Stillo of Miami go from 300 seizures a day down to four or five a week on cannabis, is nothing short of a miracle. He has been diagnosed with Dravet Syndrome, the most severe form of epilepsy.
It’s important not be mislead by the No On 2 campaign, which is using scare tactics to have you believe that Amendment 2 is the gateway to recreational marijuana. That’s false. The Amendment is strictly medicinal. Research the facts, not the misconceptions.
My drive to advocate has naturally gained strength with each story I’ve encountered. If there is a medicine out there that is helping people, we should all have a right to use it. We should not have to watch a single person suffer to realize this is a human rights issue, not a political one. Have compassion for your neighbor, and remember: this vote may affect you or your loved one some day.
Jennifer Kaczmarek, a Palm Coast resident, is an artist-photographer. To follow along with these in-depth stories please go to our blog. And to stay up to date on all related news, please follow us on Facebook at, Taking Focus, INC. Reach Kaczmarek at [email protected].